BiblioVault - Books about Chronically ill

Continuing Care in a Community Hospital

Harold N. Willard and Stanislav V. Kasl

Harvard University Press, 1972

In this report on one of the first continuing care departments in the country, Dr. Harold Willard describes how he set up and directed a program in Thayer Hospital, Waterville, Maine, to provide the personnel and services necessary for improved care of patients with chronic illnesses. The community hospital, he maintains, must be the center for developing methods for health maintenance and care of the chronically ill. Two chapters by Dr. Stanislav Kasl provide a theoretical background for continuing care and discuss the importance of information from the behavioral sciences in the development and operation of continuing care programs.

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Final Negotiations

A Story of Love, and Chronic Illness

Carolyn Ellis

Temple University Press, 1995

When Carolyn Ellis, a graduate student, and Gene Weinstein, her Professor, fell in love, he was experiencing the first stages of emphysema. As he became increasingly disabled and immobile, these two intensely connected partners fought to maintain their love and to live a meaningful life. They learned to negotiate their daily lives in a way that enabled each of them to feel sufficiently autonomous—him not always like a patient and her not always like a caretaker. Writing as a sociologist, Ellis protrays their life together as a way to understand the complexities of romance, of living with a progressive illness, and, in the final negotiation and reversal of positions, of coping with the loss of a loved one.

This rare memoir full of often raw details and emotions becomes an intimate conversation about the intricacies of feeling and relating in a relationship. What Ellis calls experimental ethnography is a finely crafted, forthright, and daring story framed by the author's reflections on writing about and analyzing one's own life. Casting off the safe distance of most social science inquiry, she surrenders the private shroud of a complex relationship to bring sociology closer to literature.

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Final Negotiations

A Story of Love, Loss, and Chronic Illness

Carolyn Ellis

Temple University Press, 2018

In this revised and expanded edition of Final Negotiations—a personal account of caring for her partner, Gene Weinstein, and then coping with losing him to chronic emphysema— Ellis reflects back on her experiences as a caregiver, focusing on identity, vulnerability, emotions, and the aging process of an engaged academic. Now, decades later, she reconsiders who she was then, and how she has continued to be affected both by these events and by writing about them. She contemplates how she might act, think, and feel if she were going through the caregiving process again, now.

Taking an autoethnographic perspective, Ellis focuses on her feeling and thinking self in relationships, narrating particular lived experiences that offer a gateway into understanding interpersonal and cultural life. In her new epilogue, “From New Endings to New Beginnings,” Ellis describes her changed identity and how Final Negotiations informs her life and her understanding of how she and her current partner grow older together. She hopes her book provides companionship and comfort to readers who also will suffer loss in their lives.

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Good Days, Bad Days

The Self and Chronic Illness in Time

Kathy C Charmaz

Rutgers University Press, 1993

Kathy Charmaz has written a compelling book on chronic illness and the effect it has on the self-concepts of those who suffer. It will appeal to anyone facing a long-term problem that seems beyond control. Her work is based on interviews with people suffering from such diseases as cancer, multiple sclerosis, and arthritis, and with their caregivers. Charmaz looks at how these people disclose their illness, how they experience their emotions, and how they manage daily life.

Illness provides a mirror that allows sufferers to see themselves and to become more introspective. As they struggle for control over illness and control over time, they also struggle to control the central images of the self. For example, the chronically ill may situate their self-concepts in the past, present, or future. Charmaz examines under what conditions they situate their self-concepts in each of those timeframes. People may say they live one day at a time. They may bracket certain experiences, such as a heart attack, as timemarkers or turning points in the past. Or they may look ahead to recovering their health. Or ahead to death.

Charmaz artfully combines near jargon-free analysis with moving stories about how people have experienced illness, usually told in the sufferers' own words. She enters the world of the chronically ill, and brings us into it.

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Helping Yourself Help Others

A Book for Caregivers

Rosalynn Carter

University of Arkansas Press, 2023

“A practical, highly informative, and sympathetic guide.”
—The Washington Post

Most of us will become a caregiver at some point in our lives. And we will assume this role for the most personal reason imaginable: wanting to help someone we love. But we may not know where to start, and we may be afraid of losing ourselves in this daunting task.

Former first lady Rosalynn Carter, a longtime advocate for caregivers and mental health, knows firsthand the challenges of this labor of love. Drawing upon her own experiences and those of hundreds of others whose stories she gathered over many decades, Mrs. Carter offers reassuring, practical advice to any caregiver who has faced stress, anxiety, or loneliness.

Helping Yourself Help Others, reissued here with a new foreword, is as relevant as ever. Long before the COVID-19 pandemic inspired national conversations about the vast undervaluing of unpaid caregiving, the dangers of burnout, and the merits of self-care for relief, Rosalynn Carter was shining a light on these matters and everything else that caregivers confront. Filled with empathy, this encouraging guide will help you meet a difficult challenge head-on and find fulfillment and empowerment in your caregiving role.

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Nested Ecologies

A Multilayered Ethnography of Functional Medicine

Rosalynn A. Vega

University of Texas Press, 2023

How functional medicine leverages systems biology and epigenetic science to treat the microbiome and reverse chronic disease.

Each body is a system within a system—an ecology within the larger context of social, political, economic, cultural, and environmental factors. This is one of the lessons of epigenetics, whereby structural inequalities are literally encoded in our genes. But our ecological embeddedness extends beyond DNA, for each body also teems with trillions of bacteria, yeast, and fungi, all of them imprints of our individual milieus. Nested Ecologies asks what it would mean to take seriously our microbial being, given that our internal ecologies are shaped by inequalities embedded in our physical and social environments.

Further, Rosalynn Vega argues that health practices focused on patients’ unique biology inadvertently reiterate systemic inequities. In particular, functional medicine—which attempts to heal chronic disease by leveraging epigenetic science and treating individual microbiomes—reduces illness to problems of “lifestyle,” principally diet, while neglecting the inability of poor people to access nutrition. Functional medicine thus undermines its own critique of the economics of health care. Drawing on novel digital ethnographies and reflecting on her own experience of chronic illness, Vega challenges us to rethink not only the determinants of well-being but also what it is to be human.

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Stigma Stories

Rhetoric, Lived Experience, and Chronic Illness

Molly Margaret Kessler

The Ohio State University Press, 2022

In Stigma Stories: Rhetoric, Lived Experience, and Chronic Illness, Molly Margaret Kessler focuses on ostomies and gastrointestinal conditions to show how stigma is nearly as central to living with chronic conditions as the conditions themselves. Drawing on a multi-year study that includes participant observations, interviews, and rhetorical engagement with public health campaigns, blogs, social media posts, and news articles, Stigma Stories advocates for a rhetorical praxiographic approach that is attuned to the rhetorical processes, experiences, and practices in which stigma is enacted or countered.

Engaging interdisciplinary conversations from the rhetoric of health and medicine, disability studies, narrative medicine, and sociology, Kessler takes an innovative look at how stigma functions on individual, interpersonal, and societal levels. In doing so, Kessler reveals how stories and lived experiences have much to teach us not only about how stigma functions but also about how it can be dismantled.

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